I'd like to do an informal poll to learn how many people here with Stage 4 Prostate Cancer had significant improvement/remission from conventional or alternative treatments and what has worked. There's been a lot of discussion on and off about some of these alternatives vs. conventional treatments so I'd like to learn which ones have been used in this group and how effective they are with Stage 4 disease. This could help us all make future treatment decisions.

a. Conventional Treatments such as first and second line ADT, Chemotherapy, radiation, etc.

Please include your details at diagnosis, treatment(s) used, how long it took for a significant improvement.

I'll start. I was diagnosed in February of 2017 with Stage 4 prostate cancer with extensive metastases all over my skeleton with lymph node involvement. I could barely walk due to pain and was taking opiate-based pain meds to function. PSA was 463 at diagnosis. I chose conventional treatments: started ADT and 4 weeks later pain free, PSA of 12. Started Docetaxel chemotherapy after one month, PSA nadir of .2 Current PSA is .44 at almost one year mark. So far my treatments are working well.

Two years in with stage IV. Gleason of 4+3. RP followed by ADT which has kept my PSA undetectable. Do acupuncture reugiously, try to eat right, keep moving and keep a positive atttitude. Try a bunch of supplements after a lot of research and sourced with reputable manufacturers only to see me liver functions detiorating. Stopped most supplements and voila my liver enzymes went back to normal. I am now starting a ADT vacation with eyes wide open.

wouldn't it be "cool" to compare treatments...? I can only say with my limited life (61 in 3 days)..... That there is something to be said for "one's destiny".

My partner was diagnosed appx 7 years ago (he's 7 years older) with PC. Gleason 7. He had radiation on an old fashioned...rattling old machine...that had to have him sent home several days because it wasn't working to come back later in the afternoon when they got it fixed. He's doing GREAT...almost negligible PSA ~~over 6 years out!

LO & BEHOLD...3 years after him...appx 4 years ago....after REALLY staying on top of my prostate (because of him)...getting PSA's done often...taking antibiotics because the urologist thought it was just an infection....to finally getting a biopsy and being Gleason 6. I had different insurance at this point and went to a hospital with a newer...(Star Trek -Like) radiation machine....it never broke down...I did my 43 session...right on time.....and low and behold my PSA never went down below 2 ~~~ and then started back up...my urologist and oncologist STILL thought it was infection....Then we finally did a biopsy and it was Gleason 7. I had bone scans and Petscans(the older kind) and everything looked good. I did a 20K out of pocket procedure call HIFU on the prostate...biopsy after that (which was horribly painful after all the "intrusion") AKA I bled like a stuck pig. Was all clear...HOWEVER, my PSA went on up...and they finally did another PETSCAN with Axumin. THEN.....LO & BEHOLD...they found several spots on hip area and a few very close lymph nodes in the groin area.

So...comparing me to him is like comparing Apples to Oranges...Now with a STAGE 4 diagnosis in appx May of this past year...I started CASTRATION (Lupron) and I just did my last Taxotere (Chemo) 2 days ago. (I did a series of 6).

Unlike you ...my PSA was only 17 when I started...it's come down VERY SLOWLY and it just now as of last test down to 2.4. Y I P E S ! ! ! I'm not giving up...but it's not looking good. I get ANOTHER of these VERY expensive Petscans on March 6 and see the Oncologist on March 9th.

So although it's "interesting" to see how other people fair on certain treatments...we are all (especially with this disease) apples, oranges, grapefruits...bananas....in otherwords "a mixed bag of fruit" ...and comparisons are just "interesting."... Perhaps we have to face (and I don't mean this in a bad way) our INDIVIDUAL. destiny. I said this once before and I was reprimanded for it...(but I sleep well at night)....I am "working on a miracle". I always tell people (and it's especially relevant now for me with all of the RESULTS I keep getting)....that "there is no good news or bad news....there is only how one reacts to THE news".

John

P.S. I'm not much on proof reading..so there are probably mistakes. All the Best to Everyone on our "Paths to Enlightenment"...

John said, .....""there is no good news or bad news....there is only how one reacts to THE news". I Really like this thought. So very, very true. It can apply at initial diagnosis, whatever that may be. It can apply at any point on any "roller coaster" of PSA results or successive "ups and downs" of treatments. It can apply to help keep perspective and to reduce suffering, overall, leaving us the space to "be" each precious day of our lives. Thank you, John.

Totally agree with you -- there are so many differences between individuals so a survey like this is interesting and helpful to a degree, but can also maybe give false hope or false anxiety. I'm surprised you weren't on Casodex earlier (that's usually the Pre-Lupron drug of choice -- first kind of chemical castration). I hope your new insurance maybe means you can either try a new oncologist (who doesn't mistake cancer for an infection?) or at least maybe consult with an expert in the field -- a consulting oncologist. I say this a lot, but being able to go to UCSF (the closest for us) and see a national expert and get his view on things has been really great for us. We do all of my husband's treatments here in Hawai`i (there are +/- to that by the way . . . ) and the onco here appreciates the second opinion on things.

Also - on the everyone different thing. My husband never had a very high PSA, so that's relative too. And once one is into it at this level, the PSA Is a marker of things but not as determinative as in earlier stages. Key is Bone Scan + Labs + CT/MRI. He's now had more of those than we can count (4 years, Stage IV at diagnosis with spinal and hip mets).

Lastly - if your insurance covers immunotherapy and you do not yet have visceral (organ) involvement, then see if you can get Provenge. There is no way to really tell if it worked except having faith in the clinical trials, but my husband is 4 years out, starting at Stage IV and still doing pretty well. (Slipping slightly in some clinical measures but he's out working on the yard right now!) Also RA223/Xofigo is a good treatment for scattered bone mets as it targets even bone mets that do not yet show up on scans. My husband had a lot of "spreckles" (my technical term) and the bone mets improved somewhat and holding steady.

Best wishes to you and for your treatment -- and that of your partner. Wow!

I actually HAD a (at least slight) infection in my prostate when they treated with antibiotics...we didn't just "guess it was that"...This was about 4 + years ago...when my PSA was still about normal and my size and all the exams looked "good". I think infections are often the "pre-shadowing" of the cancer to come...it was exactly the same way with my partner...he had infections was treated and finally biopsied and found to be Gleason 7. So infection is real...but it can be just a "side dish" to the real ....main course....Cancer! LOL

Thanks for your reply....and information. I was actually started on Casodex by my first hematologist oncologist....but just for a month or two...THEN I started Lupron and about 5 months later started my Chemo (Taxotere) which I did the last of on this past Friday (6). The Moffat Cancer Center is possibly a better center for me...but I have to stay where I am ...but they did give me referrals for second opinion from them...so I feel good about that.

You have a referral for a 2nd opinion from Moffat? Go for it! I regret not having consulted at UCSF sooner than I did.

I agree with the idea of getting Provenge if you can.

I'm 15 years out from a diagnosis with PSA 60.7 & Gleason 3+4. There are even more options now of treatments and the order of treatments than when started out. National cancer center experts have the newest & greatest knowledge to advise you with.

Hi Caring7. I live in Honolulu. My name is Wilfred Motosue. Do you go to the US TOO meetings here in Honolulu? Perhaps we can hook up one day and get to know each other. Several of my friends are dealing with this disease too. My cell: 351-1553. motosue@Hawaii.rr.com.

I also like the your idea of news being neither good or bad. How we deal with anything in life is the important thing. We all face, difficult and challenging situations, especially now with PCa. The only thing we have any chance of controlling is how we deal with the situation. We all will end up in the same place eventually, we just have different trajectories. How we live our life is the important thing. Keep working on that miracle. You are the miracle.

You had two biopsies? (not unusual) You had one with a rating of gleason 6 before the Star-Trek radiation. A T99 scan and the CT scan (with contrast?) both showed no metastases? Another biopsy showed a gleason 7.

You treated the primary (the prostate) with whole glad HIFU (heating).

Where was the HIFU performed? In the US, HIFU is not often used to treat the whole prostate. It is sometimes used for a part of the prostate. Not often.

Then you got an axumin scan, which showed mets. It looks like you went to systemic therapy, rather than target the spots that were identified by the scan.

ADT plus 6x docetaxel is the STAMPEDE protocol, which was trialed for metastatic at diagnosis, with good results.

well...I thinking the HIFU did clear the prostate of cancer...mine was not all over...BUT it had already spread it appears...and wasn't obvious from the older Petscan that I did. The new one was JUST approved and they got the machine just in time for my second one (it was still done in a trailer outside of the hospital...it was that new....). Axumen is the type scan I am referring to as the "new one". I'm getting another one on March 6 th....can't wait to see what that reveals after the ADT and Docetaxel LOL...I love the "this is where you are at right now".... that you said...I'm actually trying to figure that out...I have a referral for a second opinion from the Moffat Center in Tampa in March after the new petscan....can wait to see where "they tell me I am"....

Thanks. I'll be having my newest Petscan on March 6th...having my local (UofM-Sylvester Cancer Center) oncologist review and give me his opinion on March 9th...then seeing Dr. Zang at Moffitt center 3 days later on March 12th. So I will have a lot of information and "wisdom" to mull over....and probably big decisions to make! And we're going for a fun-filled couple of days with Tampa friends we will visit...and a 7 pm reservations for Bern's Steak House....so ....Life is Beautiful.

I love it! I'm a Kaiser member. They've taken the position that there's nothing to be gained, at least for now, by any of these newfangled scans (that they don't own) over their less than fancy bone scans & CT scans. So glad you're being pampered, you're going to have fun in Tampa, & you're in high spirits!

As you may know, stress hormones stimulate cancer & pleasure hormones fight it. You've got it just right with Life is Beautiful!

sorry forgot to tell when the HIFU was...it was JUST FDA approved and just moved into the Sylvester Cancer (U of Miami) in Miami...it was BRAND new...I was the 23rd or something early like that patient to have it done. It was NOT covered by insurance and was 20K out of pocket. OUCH...and they are NOT non-invasive...especially after what my prostate had gone through...but it was still a really interesting (and hopefully) productive treatment. Scans don't show any cancer in my prostate as of last one.

As my husband has entered more advanced stages -- we've been told the PSA is a factor, but really just one. And it's really about tracking over several months. He's had an up then a down then an up. Important to use the same lab every time, too. The important thing is to keep an eye, and as much as possible (ha!!) keep a cool head. And for the original poster -- gregg57(?) -- it seems like you still have a lot of options ahead of you, and a solid, healthy approach to it all.

See above post - everyone is different. Find a doc who listens and responds to you.

He only went up then down then back up once (3 months, 3 consecutive tests). Mostly for the past year, it's been a slow creep.

The doubling thing is really a big deal for some people, but from what I could gather at UsToo and the time I've spent on researching this disease (academic - can't help myself!) -- the doubling is a bigger deal at lower stages, long before mCRPC. And when the PSA numbers are so tiny, 0.2 to 0.4 -- it's hard to feel that "doubling" is significant. When one is cruising along on Casodex and/or Lupron, and then you start noticing rapid doubling times (how long does it take to double?) that's a significant indication of progression. At the stage IV level, and in the low digits, it's not as big of a deal on its own. Really, since my husband went castration-resistant (3 years ago, about 1 year into treatment), the doctors pay attention to the PSA but they don't get very worked up about it -- except after many months of increases, but they were slight, so they still don't get very worked up. They look at a big picture, and more keen on scan results. After about 6-8 months of slight increases in the past year, I think that's when they went to 3-month scans -- and then the scans sort of trump the PSA values.

All in all, PSA is an indicator, a signal -- it is not definitive on its own. Although it sure would have been nice if my husband's PCP had paid attention to the fact that his PSA was high for his age (and actually was higher because of a medication he was taking for hair loss) combined with a heterogeneous prostate. We would have got on this 9 months earlier than we did. Sigh. So -- tell every guy you know to take PSA and DRE seriously! And any abnormality -- see a urologist. That one recommendation . . . might have made things different (but we kinda know his is a particularly aggressive bugger so not sure how different it would all be -- so we tell ourselves.)

I'm also of a mind that a lot of it sometimes just depends on the "luck" of the biology of one's disease as it evolves. That's very individualized. It doesn't mean that one still cannot take the best of science and other factors to increase one's viable options and well being at the margins.

I also recall looking back at the charts and tables from one of the Trials leading to the approval of the ADT + Early Chemo treatment option. There were large differences between results for men with high vs. low burdens of disease. There were large differences between the 30% of men who were "data points" toward the top of the Kaplan–Meier charts vs. the 30% who were toward the bottom of the charts. There were 95% confidence intervals of quite a few months for the means of most of the primary and secondary end points in the study. .... And this was only in relation to ADT + Early Chemo.

Anecdotal evidence of what perhaps worked (or not) for one person or another is very interesting, and can be either soothing or disturbing to our minds, but it is not the whole picture, and is only partially transferrable to one's Individual circumstances.

I fully identify with your asking the questions, though. I've seen it over and over again in Prostate Cancer Support Group meetings, and I've done it myself.

“The shadow knows”! I believe that APC hides in the shadows kinda like Jack the Ripper.. I’m the lucky bastard that’s basking with no sign or Psa.. Although in the back of my mind the beast lies. However I choose to live for this glorious day in which I have no pain or fear in the front of my thoughts . For the last 2 months I’m having more great days. This is my wish and prayer for all of us APC . To have a good day without pain or mental anguish. Congrats to the pats.. I was pulling for the underdog..Thank you for your inspiration..

i'm showing your post to my Dad and encourage him! Hes currently on ADT, stage 4, one bone met (10th rib) started his injection of Lucrin Depot yesterday, been feeling short of breath, headache and other side effects at night. Hope for best!

Diagnosed July 2014 aged 67 PSA 180 symptom pain in hip whilst playing squash ( racquet ball in the states) and getting up about three times a night. Bones mets hip and back. Turps op in September and three monthly prostap injections( Lupron ) Dexamethasome added August 2016 PSA reduced slowly to 7 where it has been since late 2016 ( I'm a little disappointed it does not go lower) no chemo to date. Recent scans report stable. No pain apart form normal age niggles.

I have been vegetarian since early 2015 (I eat fish) no dairy and regularly eat tomatoes mushrooms walnuts blueberries turmeric and a huge ammount of green vegetable. I also go to the gym and/or swimming most days.

Downside weight gain, hot flushes, some fatigue. Mentally distraught for first six months but now got to grips with it and get on with enjoying life albeit it might be a tad shorter than planned but at nearly 71 I feel I have had and am having a fortunate life.

Ps A excellent book for me is prostate cancer by professor Jane Plant.

Immediately started Lupron. Helped with excruciating pain. Was on opioids for only 3-days before pain subsided. Also began Xgeva shots - for the first 2-years they were quarterly; now every 6-months.

30+ rounds of radiation to T8, only (not prostate) were begun within a few days of diagnosis.

Stampede Study was published about the time of my diagnosis - led to early chemo in August 2015 - 6-rounds of taxotere.

PSA dropped from 227 in May to 9 in June and was undetectable by September. Stayed that way for about a year. Then started rising again 0.1 or so each month.

When PSA reached 1.8 in December 2017 began Zytiga + Prednisone (with Lupron). PSA dropping again - to 0.8 within 6-days if starting Zytiga. I’m hoping this month it will be back to undetectable again.

PSMA PET scan and prostate MRI in December showed no active cancer outside prostate (including no active cancer in T8). So will likely have either prostatectomy or begin 42 rounds of radiation to prostate this spring with intent to cure.

PSMA PET is new to me. Only had one - prior to that only had MRI, CT Scan and bone scans.

I was born in 61 , dx in 2015 gl 4+4 #4 PC tumors blown out to urethra, bladder, pelvis, 2 lymph nodes lit up. Been clear no signs or Psa for over a year. Maxed targeted RT to prostate and pelvis. Only on Tak test Adt drug ,.. But started with firmagon , then eleguard, them Lupron until orchiectomy 9. 15 ouchhh... just kidding. Best thing for me. Do what it takes to survive. Simply put, that’s what we do. Dumb luck be it good or bad is a factor..

Cancer metastasis to liver lung and bone in October 2016. On ADT Doxetaxel and Carboplatin. After 17 infusions the cancer has stabilized and tumors are stable or getting better. PSA and other markers all have improved. Will continue on this regimen

Dx Stage IV in July 2014 with mets in lungs, put on Zytiga. PSA went from 12 to .72 in December 2014, then started rising again to 5.5 in May 2016, at which point bone scan showed met in right arm. Radiation in June 2016, PSA dropped to 2.9 in August 2016 and then rose to 86 in November 2017. More radiation in December 2017. PSA now 45. Still on Zytiga. So has treatment worked? I'm alive, mostly pain-free, but there is obviously cancer someplace.

Hi PSA 30,s Gleason 9in March/April spread to chest lymph too numerous for radiotherapy. Put on Zoladex, Zytiga and Pred PSA now 0.01 since month 2 of treatment. I also take Apricot Kernels with pineapple enzyme, Curcumin, lemon squeezed into water, limited diary and red meat, organic diet, vitamin C, and Essiac tea. I’m throwing everything I can at this and I’m a great believer in eating natural foods which can lower toxins and help the immune system. The stats on Prostate Cancer can be so random such as Gleason 10 fighters out living stats by 20 years these should be the guys we look at how did they beat the odds? What was it they did to stay well, genetics or treatment plans? The guy I met in my cancer Center 16 years with Gleason 9 metastic spread still going 💪 strong, Why do many beat the stats? These guys need to be examined it may hold the answer!! It’s not just looking at the Prostate Cancer under the microscope let’s look at the survivors who smash statistics👍

Dx 6/2006 age 49, gs 5+5=10 confirmed by epstein at J hopkins, bpsa148, widespead bone mets to distant sites and Ln, started zytiga, added avodart and casodex, Saw myers 11/06 he put be on high dose casodex, raised liver numbers to 3x ULN, psa nadir 3.0,Followed Myers diet as best as I could. switched casodex for estradiol patches to let liver recover , then to nilandron, next ketoconazole when it started to fail I added estradiol patches for an additional response.When zytiga was approved i did that, when it failed i added xtandi and rode it for another2.5 years,adding e patches again for a response. Did Chemo last year, and had extensive radiation to pelvic mets and prostate 2 months ago, the whole time on dutasteride. I saw many slight ups and downs through the whole time while on same treatment. Greg It is my feeling that a rise of .2 is fairly insignificant for a man who still has a prostate and that you still have lots of options. I wish you the best always.

The important thing is to remember that no one has given us a future, we only have "now" to live in. When I focus on just living in the present tense, everything is much better. I'm still learning to do that.

Hi Gregg I totally agree I had a crappy day yesterday where I felt tired and tearful but today I’ve woken up with a different attitude. I sometimes laugh at how easily I cry!! It’s a big change losing all our testosterone I’m still learning. I have my best days when I’m living in the moment. 👍

Cancer found in July 2017. PSA 104.77, now 2.37. Gleason 4+4. Zytiga + Prednisone + Lupron. Had my second shot ten days ago. Doctor says he does not expect my PSA to drop much more. He also says I have more Mets than he can count. Many bones. Had second scan two weeks ago. He scheduled my next one for 90 days instead of six months. Not sure what he is looking to see. But I am at work, vacationing much more, and moving on with enjoying life.

Diagnosed in Oct. 2010. 4 =4=8 . PSA about 6. Took Lupron then chemo. Then High dose radiation seeds in my prostate. then external radiation around prostate and on a spot on my hips. Now on Xtandi, Zytiga, Lupro. Luckily still undetectable.

Had blood & urine analysis 2 January 18 & 9 January 18 Blood reports were good all parameters inside normal range and no infection apart from metastasised prostate cancer.

From 1 January 18 until this very morning has engaged in my pH regime/treatment to embrace daily Urine&saliva pH 7.2-7.5

The last 2 CT Scans had caused controversy to the attending Radiologist and his reports,

There was obviously no further tumour/lymph nodes/sclerotic lesions worsening, but Radiologist unable to report accurately as per very qualified doctor ( my close relative) opinion,

The reason I gathered was all the Radiologist had their protocols and they have never had to do so many scans in so short time frame one after another. They normally do another scan if a patient's condition get worse but not the other way around,

Last they have never experienced the fast/furious of baking soda effects on the tumours etc. from my very own treatment from 24 December 17 to 18 January 18,

We all have differencing experiences most dependent of who is treating our bastard of a disease, what degree of manifestation the disease has progressed, what course(s) of treatment we receive, and at what point we get serious about kicking the bastard's butt.

My declaimer: We all have choices to make and who is to say that their course of treatment is better. Your treatment path is your right; so if you choose life extension palliative care, drink some internet fad like urine, participate in trials etc. Share you successes; share your failures. Stay positive and refrain from the negatives. Be a great Advanced Prostate Cancer Support Group. We all want each and every one of us to reach their goals and spend quality time on this Earth with our families.

I entered a chemotherapy plus hormonal therapy as initial treatment for metastatic cancer of the prostate trial. I underwent very aggressive treatment because I subscribed to the hypothesis that an androgen-independent phenotype exists with androgen-dependent phenotype parallel upon diagnosis metastatic disease. In other words, micro-metastatic cells exist floating around in the vascular and lymphatic system just looking for a place to land and start growing. If this is true, then would it not be better to bring treatment to the androgen-independent phenotype in addition to the androgen-dependent phenotype? Would it not be better to attack while the tumor burden is minimal and the body strong?

Guys this is one of many lines of thought facing researchers. It may be totally correct; it may not, or it may be partial correct or incorrect. Everything which I read in the Spring of 2004 indicated that I had 2-4 years, maybe 5 years left of this Earth. To me this was unacceptable. I am not passively treating this bastard without a fight.

I started this journey in March 2003 and a Gleason 7 (3+4). Like most of us I read six or so hours a night researching primary treatments and opted for 117 Palladium Seeds followed with 25 sessions of IMRT. My PSA never really came down. By November 2003 PSA was 13.0. I started researching metastatic prostate cancer; again spending many hours at night. Followed with a 25.2 reading in March 2004; 30.2 in April 2004; all agreed that I needed scans and infection for the rise was not the cause. Two weeks later, with a 32.3 with metastases to T3 and L2 of my spine, I received my first Lupron injection. My greatest fear was spinal column compression. The last week of May I entered a six-month trial consisting of three course of chemotherapy lasting 8 weeks.

I was treated in weeks 1, 3, and 5 with doxorubicin 20 mg/m2 as a 24-hour intravenous infusion on the first day of every week in combination with ketoconazole 400 mg orally 3 times a day daily for 7 days.

In weeks 2, 4, and 6, treatment consisted of paclitaxel 100 mg/m2 intravenously on the first day of every week in combination with estramustine 280 mg orally 3 times a day for 7 days.

During the entire six months, and because of its known cancer killing effects, I took 30 mg of Prednisone daily. This alone caused me to gain 80 pounds. For nausea, I took Zofran. I was precluded from taking any supplements and all over the counter medication had to be approved for use.

In February 2010, I stopped taking hormone injections. In January 2012, I started taking 4 mg of testosterone replacement therapy twice a week. My last set of scans (total of 19 scans over a 13 year period) took place in November 2016. Since original diagnosis of metastatic disease and the start of this trial, I have had 74 PSA tests along with over three pages of other tests each time.

Entering the trial was the best decision that I have ever made. I remain undetectable and met free with T levels ranging from 330 to 730. Some of ya'll recognize that this trial has changed methodology on the treatment of metastatic prostate cancer for some Medical Oncologists; not all. I garner that it in the spirit of "do no harm" and "standard care only" thought processes; perhaps it is a failure to be current on treatment. In my opinion, reducing PSA tests is certainly not helping as more and more men are faced with metastatic disease as an initial diagnosis.